Tuesday, October 31, 2017

Another Monday and Another Day of Chemo Fog

I usually begin writing my blog during my chemo-magic-joy juice cancer schmantzer treatment, but yesterday I wrote a bunch of lame gibberish because I could not come up with a post that made any sense. So instead I decided to write some of my random thoughts.

Here are some of the random topics that I thought about yesterday:

-Random thought #1: As I have said numerous times since I started writing this blog, while cancer may change how you deal with circumstances you cannot control, cancer does not change who you are or how you deal with other people.

Yesterday as I was waiting in the long line of people waiting to have their lab tests, a woman who was standing next to me was obviously terrified because she was apparently new to this rodeo. We talked for a while, and I tried to reassure her that the nurses were incredibly kind, and that once she got used to the drill, the whole experience became less of an ordeal. How my life has changed since I began this odyssey! I was that woman; I remember my first chemo day. Not knowing what to expect, we decided to prepare for everything: a list of questions, my laptop computer, a book, gloves if my hands got cold, my Minion blanket, nose spray for stuffiness, lip balm, lots of treats because who knew what I would feel like eating, and lots of nerves. My how far I've come in this trek: now I take my laptop, a few snacks, lots of patience, and most importantly, my anti-nausea pills.

After that as we were waiting to be called back to see the nurse practitioner, a man sitting across  from us started up a conversation about the truck crash that we had seen as we were getting close to the hospital. He then launched into a diatribe about people using cell phones. However, when he started talking about ladies with cell phones, he got crankier and crankier, and I just smiled, tried to be polite, and did an internal eye roll.

When I walked back to get my infusion, there was an older gentleman using a walker with wheels. He was wearing a silly Halloween hat that lit up, and that made me (and everyone else) smile as he jauntily scooted his way back to the infusion area.

As I watched these 3 different people, I once again became aware of how versatile and caring the nurses are as they deal with numerous patients who have different and wildly varying personalities, different cancers, and different needs. Since most patients have several different chemo drugs administered during the treatment, the monitoring of the different chemo treatments is critical; if one nurse is dealing with Patient A and the timer for Patient B goes off, another nurse will step in to make sure that patient is cared for in a timely manner. Their team work makes them a pretty well oiled and caring team.

--Random thought #2:
During the past couple of weeks I have run into a number of my former students (from the Class of 81 through the Class of 97). Interestingly enough, most of them asked me what is really going on in public education—and without my prompting, most of them had concluded that the bottom line was about one money making scheme or another.

All of them were pretty typical students when they were in school, but the one thing that came through with all of them was the importance of the relationships that they built while they were in school. The other thing that came through was the value of neighborhood schools.  Interestingly enough, since politicians have taken control, the focus is never on the importance of relationships to learning and to growing up but rather on test scores and other dubious methods of measuring what is important.

--Random thought #3
When I was struggling to write this yesterday, one of my friends said, “Why don’t you write a love letter to the Cubs?” I thought about this for a while, and then it occurred to me that I would rather write a love letter to all of the people and things in my life for which I am grateful. However, I decided to save that letter until I finish my chemo treatments, and that will truly be my love letter to the world.

--Random thought (and quote--just because I like it) #4

Wednesday, October 18, 2017

Running on Empty

I usually write my blog while I am having my chemo infusion; however, yesterday I was too tired to have a coherent thought, so I chased a bunch of zzzzzzzs throughout my treatment. I seriously considered using toothpicks to keep my eyes open.

Part of my exhaustion was due to trying to fit in too much activity with my limited energy. Back in August, I asked my oncologist if I had his okay to attend the NPE (Network for Public Education) conference in Oakland in October. His only restriction was that I made sure that I kept my hands washed. On the flight out to San Francisco, I wore latex gloves, but by the time we got to Oakland, I was getting a bit tired of people staring at my hands, so I deep-sixed the gloves. However, due to the fires that were blazing in Santa Rosa and in various and sundry nearby areas, the air in Oakland left much to be desired for those of us whose systems are immune-compromised. So I limited my time outside, and I wore a mask when I did have to leave the hotel.

Needless to say, the conference was well worth the time and the exhaustion of traveling through 3 time zones and experiencing new sleep(less) patterns. Seeing old friends and meeting new education activists was energizing and hopeful. In this brave new world of education privatization, it is easy to become dispirited and frustrated, and yet the keynote speakers were engaging, inspiring, and thoughtful, and they gave me hope that together we can be the voice of reason and the change that we want.

There were lots of highly emotional moments for me, and many of the people who were aware of my cancer schmantzer odyssey said very kind things, which was both lovely and embarrassing. When Diane Ravitch introduced me and the other NPE Board members, I got more than a little choked up that someone whom I have respected and admired for so long said such personal and kind things about me. Holy cow!

However, the trip home was beyond exhausting. We took the train (aka the BART) to San Francisco airport, trying to balance our suitcases while being squeezed in between lots of commuters. From there we flew to Dallas, where we ran into more exhausting frustrations. We flagged down an airport cart driver to take handicapped travelers to their gates, and we asked him if he was going anywhere near our gate. He said that he was, so we hopped on. We have always taken the tram to get from one gate to another, so I have no idea why we chose to ride in the cart. Obviously, our tired brains were in a fog, but we eventually spotted the SkyLink tram and got to our gate just in time to board.

Among the many things on this trip that I learned through random conversations with people who have experienced similar health issues and other unspeakable tragedies is that our culture does not give us the language to deal with unexpected life twists or tragedies.
  • Some people send links that include every possible horror story imaginable. Umm, not sure I needed that.
  • “I don’t know how you are dealing with all of this.” Umm, I didn’t know that I had a choice.
  • “Don’t take that chemo. No one ever comes out alive.” Umm, thanks for the encouraging words.
  • Some folks avoid me because apparently they did not get the memo that I am not contagious.
Fortunately, there are friends who are not afraid to ask me specific questions or to offer specific help which tells me that they still see me as a person and as a friend and not as a victim.

Despite my exhaustion and frustration from this energy depleting trip, I am glad that I went to Oakland. It was good to be with other people who care about kids and who are willing to fight for the them.

This whole weekend was somewhat surreal.  Due to the nearby fires, the beauty of the Bay area was masked by the smoke from the fires. Reading all of the "me, too" comments on social media raised my awareness of how pervasive sexual assault really is. Realizing that our government has not yet done much to help our citizens in Puerto Rico is dispiriting and depressing.  However, it is good to know that previously unengaged people are beginning to get engaged because it has become apparent that there is an assault on nearly everything we have taken for granted.

All in all, the conference gave me the WILL to carry on with the activism that I have been engaged in since 2011. Obviously, I do not know how my story will end, but I do know that nowhere in the text will it ever read..."I gave up."

Wednesday, October 4, 2017

Reaping the Whirlwind

The past two weeks have been a whirlwind of highs and lows. I have been incredibly busy, watching the Cubs win their division, traveling to Indianapolis, going to an amazing class reunion, and fielding enough phone calls to make me feel like Lily Tomlin's infamous telephone operator, Ernestine. While all of this has been busy and exhausting, life continues and so do I.

In my last post I mentioned  all of the frustrations of my port and its access to the blood return. So my oncology  team decided that I needed to do a CT dye scan to see if there were  problems with my catheter. As soon as the techs saw the scan, they noted that the catheter had a loop in it, which was causing the issues. When things go belly up, I often figure it is because I have done something dumb, so I asked them if my working in the yard could have caused the pick line to loop. The nurses told me that unless I was moving boulders, that was highly unlikely. Of course, I didn't tell them about my Sisyphean desire to fix all that is wrong in the world.

After numerous calls between my doctor and me, we finally decided that my port needed to be replaced, and they quickly tried to schedule this minor surgery in short order.  I was able to have my port replaced on Monday. In the meantime, since I am now half way through my treatments (7 down, 5 to go), I had yet another CT scan on Friday to see if the chemo is working.

All of this caused this past weekend to be a rather stressful weekend where I lost my faux-Zen and started to imagine the results of what might lie ahead. When I talked with my doctor on Tuesday morning about what the scan meant, he  said that there was nothing that he could see that raised his concern about my CT scan. Even though I was hoping that he would say, “We were just fooling...all is well,” I was reasonably sure that that would not be the case. Apparently, my cancer  is being treated as a chronic condition for now...and I can live with that.

Even though I have steeled myself against the worst possible outcome, the past couple of weeks with all of its ups and downs have been quite draining. While I have been preparing for the worst, the most trivial of things  bring on unexpected emotional breaking points.  A few days ago in the midst of my whirlwind of activities, I stopped to drop off some dry cleaning at the place where I have gone for almost 30 years and saw a sign that they had gone out of business. Seeing this unwanted bump in the road, Donna and I were on the brink of crying. On top of that, Zesto Ice Cream is now closed for the season. Sadly, it is the small things that are most likely to drive us over the edge. 

I have been dealing with cancer schmantzer for over 6 months, and yet I am still blown away by the fact that life can turn on a dime. So many people have been affected by both natural disasters and man-made massacres. Who knows what the reason is for any of the heartaches which lie before us? Whether it is disease or climate change or random acts of violence, it is important for us to recognize that we are good people, and the humanity within most of us causes us to reach out to do whatever we can to show kindness and love to one another.

In the words of Stephen King, 11/22/63